Hi everyone -
I've been distant for awhile because life's just been busy, but I wanted to pop back again to report that all 3 of my boys are growing again!!! To recap briefly, my 3 year old had "weak positive" bloodwork for celiac, iron deficient anemia, and failure to thrive, while my 5 year old had neg. celiac bloodwork, but had elevated liver enzymes and was also failure to thrive. And then my 1 year old back in July had started in the 75th percentile at 3 months and by a year had fallen off the bottom of the growth chart, had SEVERE reflux, and very weird stool while on gluten.
As of June 4th, due to the 3 year olds bloodwork, all the other symptoms put together, knowing that I am DQ 2.5 positive, and just having that mommy instinct, I took them all off of gluten completely. I've been tracking their weight on a weekly basis since June 4th and I'm so happy to say that they are all back on the growth charts. The baby and the oldest are in the 25th - 30th percentiles now and the 3 1/2 year old is just above the 12th. My youngest has gained 6 pounds since June and the other two have put on just above 3 pounds. Not to mention no more tummy aches, normal stool for all of them, energy abounds, and their cheeks are not flaming red anymore. I am so excited to see them happy and healthy again.
Thanks to all for the encouragement and wisdom that is shared here. It's a big help to those of us on the journey to figuring all of this out!

Yeah - I did talk to the counselors. I totally understand that the child had no idea how the food would affect my son; the bullying aspect of it is what bothered me more than anything. I''m sure things will be fine now and he is having a great time overall :-). I was just surprised that kids that young really care about what each other is eating/not eating. I realize it could have been over anything - it just happened to be around what I call his "kryptonite!" I'm sure this won't be the first time things like this happen, so I guess it's good practice!

Soooo, my son is at a Day Camp this week. Things have been going very well. I've packed his lunch and extra snacks for when they do that sort of thing and he knows to only eat what I've packed. However, yesterday there was another 5 year old who apparently couldn't understand why DS couldn't eat the graham cracker snacks that had been provided. He and another kid were waving it around DS and telling him to just take a bite, so DS said, "Please stop doing that." One of the boys stopped, while the other one crammed the graham cracker against DS's mouth!! Who does that!?! DS said, "Mom I just went like this (and pursed his lips together really hard)." I told him he did a really great job handling the situation and protecting his body, but several hours after picking him up from camp he proceeded to have several rounds of diarrhea. I'm not crazy to believe it was from the graham cracker crumbs on his lips, correct? I really just don't understand why it bothers other people so much when we choose not to eat or really just can't eat certain foods -- even at 5 years old! Craziness!!!!

One thought is to have them all do the genetic testing. It wouldn't give them an official diagnosis, but it might help you know which kids to watch more closely and to have blood screens done on every couple years or so. My doctor and I think that I have celiac disease (couldn't be officially tested because I was already wheat free from a wheat allergy, but carry DQ 2.5 and have all the symptoms plus resolution once gluten-free) and one of my children has positive bloodwork. We're planning on doing genetics with the other 3 at some point down the road just so we can get a better idea of who to watch more closely. I did mine through Prometheus and thought they did a great job. Although, I think with having a 1st degree relative with a positive diagnosis, they're supposed to get screened every few years anyway. Good luck and welcome aboard!

Man I'm hoping we get to see some of this growth too!! All 3 of my boys are in about the 5th percentiles, but I just took my 1 year old in for his well child and at 4 mths he was 75th for weight, at 8 mths he dropped to the 10th, and now at 1 year he dropped again to the 5th He's been gluten free since the 8 month appt., so I was hoping for a little more growth than what we saw. His height curve dropped to WELL BELOW the bottom of the chart. He's sensitive/allergic to milk, so any ideas for high fat/high calorie foods that I could give him. I'm already trying egg yolks and avocados. I want to figure this out before he wastes away in front of me Thanks everyone!

If I had to guess, I'd say you have DQ 2.2 because I also did the Prometheus testing and mine came back as "DQ2 heterozygous," which put me in a "high" risk category. At the bottom of my report where it lists what alleles were detected it stated: DQ2.5 (HLA DQA1*05:DQB1*0201) and other non-risk alleles. I'm assuming the only thing that separates the "DQ2 Heterozygous" and the "DQ2/other low risk gene" categories are the subtypes. Please correct me if I'm wrong though!!

Just in case anyone else is wondering I talked to someone at Sandoz, the makers of the Levothyroxin 112 mcg that I'm taking and they said that while they can't certify that their products are gluten free because they don't test for it in their facilities, none of the actual ingredients in the medication contain gluten. Do you think it's safe to assume that the medication is okay then???

Thanks everyone for the responses and esp. for that website. I had tried contacting the company, but hadn't got very far, and then ended up just getting busy with other things and forgetting all about it. I will pursue that further for sure. I haven't had another migraine since Sunday and am praying things stay that way!!!

Has anyone experienced migraines after going gluten-free? I've never had a migraine before in my life but was just hit with a terrible one last night complete with auras and everything. As far as I know I've been gluten free but maybe some sneaked in somewhere. The only thing I can think of is possibly my thyroid meds that I take everyday (Levothyroxine by Sandoz). I've tried looking into them, but haven't been able to get an answer yet. Does anyone else know about that company or experienced something similar?

Just wondering if you ever found out anything more? My 3 year old was just diagnosed with "weak positive" bloodwork and slight anemia among many other symptoms. My other son is 5 and we put him on a gluten-free diet since he also shows symptoms although his celiac panel was in range. His liver enzymes were elevated though and I know that I am DQ2.5 positive, sooooo I'm going to be proactive and hope we just catch it early.

Oh wow, Nora, thank you so much for pointing that out. From what I'm reading online, it looks like the deamidated IgG test has a 98.6% specificity rate. I guess that puts an end to my wondering if it was truly positive bloodwork for celiac! I was originally thinking that that number was sensitive to gluten, but not specific for celiac, but I hadn't realized it was a diff. test than the old one for IgG. Thanks for clearing that up for me!!!!!!!! It's looking to me like we've caught it early on, which I'm so thankful for.

My doctor actually is convinced that he has celiac. I just wasn't sure if technically speaking we could come to that conclusion by most medical standards w/o pos. bloodwork and/or a biopsy. I also believe that he has celiac, but there's part of me that wants to know for sure whether it's a gluten sensitivity or an AI disorder. I know it doesn't really make a difference as far as his diet is concerned; I guess I'm just curious.
We do suspect that he carries one of the genes for celiac because I recently tested positive for DQ 2.5 At some point we would like to do the genetic testing for him as well.
Thanks for the point on the anemia. I thought that was the case that that type of anemia is strongly assoc. with celiac disease, which is another confirmation that we're on the right track.

My son was diagnosed as celiac today. He definitely manifests many if not all of the classic symptoms for children, so we are going to go gluten free as we have already seen improvement, but I have a question regarding his bloodwork because as I understand it, without IgA being positive and/or a pos. scope, he can't officially be diagnosed as celiac, correct?
At 1 and a half yrs of age were:
IGG 19.9 (20.0-30.0 weak positive)
IGA 2.3 (<20.0 negative)
TTG IgA .2 (ref. range 0.0 - 10.0)
(No total IgA was drawn, so I don't know if he's deficient or not)
At 3 yrs. old they are:
IGG 16.0 (<20.0 negative)
IGA 7.2 (<20.0 negative)
TTG IgA 2.4 (ref. range <4.0)
My questions are:
1) Is it normal for someone's TTG IgA to be increasing over time?
2) Can we get a total serum IgA count while being gluten free?
Also, his complete blood count revealed slight microcytosis (iron deficient anemia as I understand it) and a slightly elevated neutrophil level.
Thanks for your help!!

My son is exactly the same. At his 2 year check up his labwork was inconclusive (like a point or two away from pos.) and now at his 3 year checkup they were normal, but he is also 3 1/2 yrs old and weighs about 27 pounds. He has tummy aches all the time, explosive BMs, and flaming red cheeks. I have issues with gluten too and just found out that I am DQ2.5 positive, so it gives us a little clue. We meet with our doctor on Thursday to see if we should just do a gluten free trial or have him get biopsied. There are a lot of false negatives for bloodwork in kids, so yes, your daughter still could have it. We accidentaly went gluten free for a day with him and then the next day he had gluten and it took him out completely. Even though our appt. isn't until next week, we're going gluten free until then to see what reaction we get. However if we do decide to get a biopsy he'd have to be on gluten. Good luck on your journey and keep us posted!

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!